Tuesday, June 16, 2015

Enema Updates - A New Setup

Life quickly becomes routine even when there are special needs involved.  For nearly 2 years we have done a cone enema every single night with Mason.  He simply doesn't poop (neurogenic bowels that are pretty bad) so in combination with paying attention to how much fluid he drinks, what foods he is eating, and taking Miralax daily, we also have to do an enema. 

If you really want to understand how huge this update is then please take a moment to remember what our enema routine has been. 

100_4570We use a cone enema because Mason’s anus is really weak and doesn’t hold fluid in well.  So what you’re looking at is a bag to hold fluid, a tube, and a white cone on the end of the tube.  We use water and mineral oil currently for the fluid.
100_4574There is a lock that slides open and shut to control the flow of the solution.  The cone keeps things from coming out.  Why is that important?  Well, we want the fluid to have time to go up through the whole colon.  The cone mostly keeps Mason’s bottom from leaking.    
100_4575The process takes time and will take longer the older he gets.  For nearly two years we've laid Mason on his side on a towel right outside our tiny bathroom.  We hang the bag inside the bathroom on a hook.  Then we put just part of the cone tip into his bottom and hold it there.  Open the lock and let the fluid in, then close the lock and wait, holding that cone in place.  Our wait time is about 10-15 minutes.  During this time we need to keep Mason happy laying on his side, and we have to keep holding the cone in place.  It’s a good thing he’s so easygoing!  This has become a special tv time for Mason.  He can choose a cartoon to watch on the Kindle Fire while he's laying here. 
IMG_20130817_195651When our timer beeps we remove the cone and move quickly to the toilet.  That means standing up, picking Mason up, and setting him on the toilet. It is sometimes a very messy moment...ahem.  We need to keep Mason on the toilet until he poops.  (Isn't that a cute photo?  It's from a year ago!)  When he is older he will learn to use his abdominal muscles to try to bear down.  For now the most effective ways to get him to engage that abdomen are:
  • Laughing like crazy.
  • Coughing
  • Crying
Mason is finally at a point where he'll cough at us when we ask - which we do on and off while sitting on the potty.  The other thing he does on the potty is play games with us or continue watching a show, taking breaks to cough.  This part of the process takes between 20 and 40 minutes, making our enema routine about an hour long every single night.

Another challenge is that Mason doesn't have the balance to sit on here safely on his own.  Daddy or I sit on a low stool right in front of him and hold on to him.  It's pretty awkward because of the small bathroom (there is a sink right behind you) and it gets more awkward when you add in the fact that I'm pregnant and growing rapidly.

NOW you can understand why today's change is going to be wonderful on several fronts.  Here is our new setup:

We bought this Drive Medical Folding Bedside Commode on Amazon and it arrived today.  We put it together and left off the bucket that would normally act as the toilet bowel.  Then we adjusted the seat so it sits a few inches above our actual toilet seat.  Why?  Because that way I can slip my hand in between the actual toilet and Mason's bum up on the new seat (with our soft potty insert on the gray seat).  I hold the cone in while Mason is already sitting on the toilet!  It is a little messy when I take the cone out, but not as messy as it was lifting him off the floor and carrying him over to the toilet like we had been doing.  No more transferring from the floor to the toilet! 

Other wonderful things about our new setup:
  • The arms!  This folding toilet setup has armrests that Mason can use when he's feeling unsteady.  If he tips to the side he catches himself on the armrests.  It's a beautiful thing.
  • I can sit on a taller stool, making it a more comfortable process for me or another adult to do. 
An enema is one more thing that *needs* done in our life. We have to be home for at least an hour every single evening to do the enema.  We also have the every four hours cathing schedule (8am, 12 noon, 4pm, 8pm, 12 midnight).  Then we have physical therapy and stretches to do several times a day.  Oh, and his medication needs done twice a day (8am and 8pm).  Add in cooking and mealtimes, playing, homeschooling siblings, cleaning the house, and life in general and you can see why we live by a routine.  We have to!!!  However it IS routine for us.  This is just normal everyday life now and feels that way.

Oh, and if you made it this far did you notice Mason's new black glasses?  I'll post about those soon.


  1. THANK YOU FOR SHARING THIS!! We start our program this week and I am ordering this chair STAT. Yay!!

    1. You're welcome Mary Evelyn! One more thing we're considering is cutting a pool noodle to fit between the gap of toilet seat and toilet chair around the sides and back because depending on how 'forceful' things hit the water there could be some splatter. Ahem. If we end up doing that I'll be sure to post a photo.

  2. What a big improvement that has to be for you and for Mason---it's the little things that can make a real difference when you have to do something over and over. He is such a cutie!

  3. Check your bucket that you removed. There should be a sleeve thing for exactly that purpose. You might be able to use it and cut a place for your arm to reach through.

    It also looks like you need to invent a foot rest. It could probably be as easy as a piece of material tied from one front leg to the other, but it might even help Mason poop if it's high enough to bring his legs up in a semi-squat.

    I'm so glad that you found something to help even just a bit!

  4. Thank you for sharing all this detail!!!! This is SO good for me to read and learn. The new chair looks awesome.


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